Julian Meier gets a blood transfusion at Riley Hospital for Children at IU Health earlier this year. Julian, a 15-year-old of Franklin, has been diagnosed with pediatric myelodysplastic syndrome.
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One by one, members of Pilsung ATA Martial Arts filed silently into the front yard.
Dressed in their official white taekwondo uniforms, they had come to honor one of their own. Julian Meier stood on his family’s Franklin front porch, watching with excitement as his fellow martial artists stood before him.
For the past eight years, Julian had been training to work his way through the ranks of the martial arts. At the same time, the 15-year-old had faced a more formidable challenge — treatment for pediatric myelodysplastic syndrome, a rare blood disease.
On Dec. 10, the Pilsung ATA community came to Julian to reward him for his perseverance and courage. He was presented with his third-degree black belt in a special ceremony, featuring current students and other black belts who drove from as far away as Chicago to take part.
“I’m really happy to see all of my hard work come to fruition. Even though I wasn’t able to take my test for my belt, I earned it,” Julian said.
The ceremony was one of many examples of the local community rallying around Julian and his family — including fundraisers, meal trains, t-shirt sales and more.
Supporters will host Bingo for Bone Marrow on Saturday at Creekside Elementary School, featuring bingo, a blood drive, bone marrow donor registration, a silent auction and other activities.
For Julian, the community has helped lift him up.
“It’s really encouraging to know that so many people want to help me through this time,” he said. “I’m in awe of all of these people.”
The Meiers’ long nightmare has been ongoing almost since Julian was born. He seemed to always be sick as a child — in and out of doctors’ offices and repeated trips to the emergency room. Most of the time, the doctors couldn’t figure out what was wrong with him. They summed it up as Julian simply being a kid who gets sick more often.
But Jessica Meier suspected it was something more severe. When Julian was 4 years old, he developed a fever of 105 degrees that would not break, requiring another trip to the doctor where the family pleaded for them to believe Julian was truly sick.
They were referred to Riley Hospital for Children at IU Health, sent to the infectious disease department. But Julian’s mysterious malady continued to confound the medical team. Over the coming years, he endured cycles of fever and good health. Doctors took countless blood draws and biopsied his bone marrow repeatedly.
Tests revealed strange anomalies with Julian’s blood. At different times, he’d have next to no platelets — cells that cause the blood to clot — or white blood cells, the key components to the immune system.
At different times, Julian was diagnosed with different conditions, such as immune thrombocytopenia purpura, or ITP, a disorder of the platelets, or neutropenia, or lack of white blood cells.
Treatments to allay his symptoms had some success, before the illnesses came roaring back.
“He didn’t follow the normal patterns for ITP. Normally, you’d be low and stay low, with lots of treatment to get you where you need to be, or you bounce back and it never happens again,” Jessica Meier said. ”Julian was all over the place — normal, and then he’d drop.”
Julian and his parents, Jessica Meier and Jordan Meier, endured the rollercoaster ride of illnesses for years. They kept searching for answers, but all of Julian’s tests were inconclusive.
“It was crazy. How could he have all of these weird things and it not be under an umbrella,” Jessica Meier said. “It doesn’t make any sense.”
Even through all of the turmoil related to his health, Julian persevered. He started taking tae kwon do, earning is first-degree and second-degree black belts over the years. His natural curiosity thrived, and he developed a deep interest in robotics.
As a student at Franklin Community High School, he was on the tennis team and joined the robotics team. He was an honor student.
Still, the neverending threat of sickness wore on him.
“When I was young, it didn’t really affect me that much, because it was normal for me. I didn’t know what it was like to run around and be active all the time, to be a normal kid. I still had fun, but it was rough,” he said. “As I got older and realized my situation, it wasn’t always the greatest. But I tried to make the best of it.”
The breakthrough came only this year. A new team of doctors, including one specializing in blood-based diseases and another centered on the immune system, took over Julian’s case.
After blood work done in September showed his blood cell counts were crashing, Julian had another bone marrow transplant. His pathology reports showed he had myelodysplastic syndrome — a rare blood disorder in which the bone marrow does not make enough healthy blood cells. The blood cells lose their ability to mature and function properly.
About four in one million children are diagnosed with the disease, according to Boston Children’s Hospital. Only two children were diagnosed with it in Indiana last year; Julian is the only one being treated for it in the state being treated for it.
The only cure is a bone marrow transplant.
“(The doctor) immediately called the stem cell team in, and my husband and I immediately got swabbed to see if we were a match. They gave us a kit to swab our 4-year-old daughter. It was a whirlwind from there,” Jessica Meier said.
Since the diagnosis, Julian has endured multiple bone marrow biopsies, including having a port put in to accommodate the repeated tests. He travels to Riley Hospital for Children multiple times a week for blood transfusions while waiting for a bone marrow donor.
A light may be appearing at the end of the tunnel, though. Julian has agreed to do a clinical research trial.
“(Myelodysplastic syndrome) is so rare in children that they don’t know the path to take for the best donor,” Jessica Meier said.
Though Julian’s sister, Mila, was a perfect match for him, she is too young to be a donor. His parents are partial matches and remain options, though researchers are looking into the possibility of finding a full match with someone who is not related to him. Through the trial, a computer will analyze the best option.
Julian will be followed closely as they test which pathway is best. He insisted he do it, for the benefit of other patients with myelodysplastic syndrome.
“I always love to lift people up — even when I was little, even if I didn’t realize it,” he said. “When I was hooked up to those machines, I was still smiling.”
When discussing the decision, his parents were torn over the idea of letting him do this. Julian spoke up and said, “I know God put me on this journey. He’s in that computer picking.”
“That tore me up,” Jessica Meier said.
The search is ongoing to find more matches for the clinical trial, which has driven events such as Saturday’s Bingo for Bone Marrow. The open-house event will include free bingo, though donations will be accepted. Organizers have planned a blood drive and will have swab kits from Be the Match, the National Marrow Donor Program.
Silent auctions, t-shirt sales and snacks will also help raise money.
The outpouring of support Julian and the Meiers have received from people around them has been staggering, Jessica Meier said.
People have started a meal train for them, and an Amazon Wish List has provided Julian with a steady stream of gifts. Emerald Isle Design in Franklin is selling “Julian’s Army” t-shirts that raise funds for The Cure Starts Now, an organization raising money for research to eliminate all forms of cancer.
Connections with the Indiana Pacers got Julian a limited-edition basketball signed by one of his favorite celebrities, Adam Sandler. The ball reads, “You are my buddy for life. Love, Adam Sandler.”
Of particular impact was the gesture by Greenwood’s Pilsung ATA and its master instructor, Rosemarie Myers. She worked behind the scenes with ATA Martial Arts, the global organization overseeing their branch, to have Julian awarded his third-degree black belt — a wish that he had made.
“When I saw wish requests on Jessica’s Facebook page, I knew there was a request we could grant. I petitioned our Grand Master to accelerate the rank that Julian planned to test for, but again got sick just before the test,” Myers said. “Of course, Grand Master obliged and brought his belt and certificate to a camp I attended last weekend.”
On Sunday, 24 black belts came out to the Meiers’ house to participate in the black belt ceremony.
“Julian is such an amazing kid that I am certain he will return and test for the belt to earn it himself when he’s fully recovered, exemplifying the meaning of Pilsung — personal victory,” Myers said.
Myers also started a GoFundMe page to support Julian and his family. The link has been spread throughout the ATA community, and as of Thursday, had raised $3,785.
The family is so grateful for the help they’ve been given. They want to use their situation and their story to give back to others.
“We’re here to educate, and also to tell parents they can’t give up. If you know something is not right, don’t let the doctors tell you otherwise,” Jessica Meier said.
IF YOU GO
Bingo for Bone Marrow
What: A fundraiser for Julian Meier, a 15-year-old Franklin teen in need of a bone marrow transplant. The open-house event will include free bingo,a blood drive and registration for the National Marrow Donor Program. Silent auctions, t-shirt sales and snacks will also help raise money.
When: 1-4 p.m. Saturday
Where: Creekside Elementary School, 700 E. SR 44, Franklin
Cost: Free to attend, though donations will be accepted.
